This session at the Stanford University School of Medicine "Medicine X 2013" conference examined the perception gap between patients and their spouses about severity of disease and suffering, with insights from a cancer patient, Maggie Heim, and her husband, Paul Hoffman, and from Aanand Naik, MD. Healthcare professionals need to be more attuned to the potential for a communications disconnect between a patient and his/her caregiver, which could lead to inadequate treatment. We discussed several studies, including a survey that Inspire conducted in 2012 in collaboration with Novartis, illustrating this gap: "Perceptions of stage IV NSCLC patients and caregivers regarding severity of symptoms and willingness to participate in supportive care trials."

1. Closing perception gaps between
patients and their caregivers
Sept. 29, 2013
MEDICINE X
@brianloew Brian Loe
@Helpkeepasister Maggie Heim
Paul Hoffman
@Empoweringpts Aanand Naik, MD

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Overall, caregivers noted symptoms to be at
higher rates than patients, while patients
were much more willing to participate in
supportive care trials to evaluate novel
methods to manage symptoms.
Perceptions of stage IV NSCLC
patients and caregivers
regarding severity of symptoms and willingness to
participate in supportive care trials

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Perceptions of stage IV NSCLC
patients and caregivers
Perception of symptom severity by Stage IV NSLC patients & their caregivers
Patient
Caregiver
0
0.5
1
1.5
2
2.5
3
3.5
4
Loss of
strength
Weakness
Poor sleep
Moodiness
Fatigue

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Patient
Caregiver
Pain
Difficulty
breathing
Naus/Vom.
0
0.5
1
1.5
2
2.5
3
Perception of symptom severity by Stage IV NSLC patients & their caregivers
Perceptions of stage IV NSCLC
patients and caregivers

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Patient
Caregiver
0
10
20
30
40
50
60
Wt. Loss
Supp.Trial
Report of weight loss & willingness to participate in a supportive care
trial to manage symptoms/feel better
Perceptions of stage IV NSCLC
patients and caregivers

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www.helpkeepasisteralive.com

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The hedonic treadmill, also known as
hedonic adaptation, is the supposed
tendency of humans to quickly return
to a relatively stable level of happiness
despite major positive or negative
events or life changes.
Hedonic adaption

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Mispredicting and Misremembering: Patients
With Renal Failure Overestimate Improvements
in Quality of Life After a Kidney Transplant
Health Psychology2008,Vol. 27, No. 5, 653–658
• Data show we have set-points in our quality of life and tend to
adapt quickly as our health status changes but these
adaptations are around our set-point.
• Affective forecasting highlights human bias and errors
in making emotional forecasts.

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Key Findings
• In addition to standard patient/physician interactions, patients and
companions were often found to discuss medical information and to
exchange opinions between themselves without the physician actively
participating; we called these instances family time-out .
• Physicians may benefit from observation of such instances of family
time-out since these may contribute to consultation outcomes which
are better understood and supported by the patient's social system.
• This finding highlights the importance of companions being
encouraged to attend consultations in which difficult decisions are
made.
Recognising the importance of
family time-out in consultations: an
exploratory qualitative study
British Medical Journal Open2013; 3:e002144 doi:
10.1136